Alibi V.29 No.29 • July 16-22, 2020 

News Feature

Non-COVID-Related Treatments Pushed Aside

Those with preexisting conditions face more hurdles than ever

Most visits require direct contact, a high-risk situation during COVID-19.
Most visits require direct contact, a high-risk situation during COVID-19.

As the coronavirus pandemic progresses into its fifth month, Americans and others around the globe continue to adjust to massive interruptions of daily life. From city and statewide lockdowns to shuttered businesses in a tanking economy, the coronavirus has irreparably changed life as we know it, forcing us to adapt in unexpected ways. In healthcare it has become far more difficult for people with existing conditions to get the care they need.

Meet Heather, an Albuquerque local who has been shorted by the fractured healthcare system at every turn. Weekly Alibi is using a pseudonym to protect her privacy.

In 2015 Heather’s doctors identified a genetic mutation called MTHFR (no, it doesn’t stand for “motherf#$%er,” although that would be much simpler than its real name). MTHFR mutations make it difficult for the body to break down certain metals like aluminum and B vitamins like folic acid. This bars Heather from taking certain types of medication, which can build up and become toxic if not broken down properly by the body.

Methylenetetrahydrofolate reductase—all right, we’ll stick to MTHFR—can lead to other complications as well. In Heather’s case: fibromyalgia, chronic migraines and a connective tissue disorder called Elhers-Danlos Syndrome (EDS). Before the pandemic Heather saw her rheumatologist every six months. He’d do blood work, a physical evaluation and discuss the efficacy of her medication.

But since stay-at-home orders went into effect in Albuquerque, Heather has only been able to see her rheumatologist through telemedicine visits. She explained that physical examinations have been an important part of her treatment, and that it is just not possible to perform a thorough evaluation remotely.

MTHFR kicked off 2020 with a new problem for Heather: In January, she found out that her gallbladder is severely inflamed and functioning at only two percent of its normal capability. Such low functionality dramatically increases the risk of her gallbladder rupturing. (As a person who’s been rushed into emergency surgery for a ruptured appendix, I can personally attest that the experience holds up to everything a life-threatening event ought to be.) After further testing, Heather’s practitioners agreed that the best preventative measure would be to remove it, soon. When she attempted to schedule the surgery in early March, she was surprised to find that it was considered an “elective surgery,” since it was not an emergency—yet.

Although the COVID-19 virus poses a ubiquitous health threat to the population, it is particularly dangerous to those battling preexisting conditions. Many patients like Heather who are immunocompromised face a much higher risk of contracting COVID-19. Despite doctors’ cautions against high-risk patients visiting clinics, emergency rooms and other public spaces, the postponed surgery and lack of preventative treatment drives up Heather’s chances of ending up in an emergency room.

In fact that’s exactly where she found herself earlier this month—four times in a single weekend. The ER staff assigned to non-COVID cases was ill-equipped to provide her with the care she needed. Heather felt that the staff were trying to discharge her as quickly as possible, not taking the time to listen about her medical history and her concerns and making quick and careless decisions that led to a near-fatal experience.

Heather admitted herself to the emergency room after experiencing an unmerciful pain that she feared might be her gallbladder shutting down completely. Dismissing her explanation that inflammation and dwindling functionality do not show up on a scan, ER doctors did an ultrasound and bloodwork and determined that “everything was fine.” They dismissed her with a lidocaine patch (local anesthetic) and a come-back-if-it-gets-worse order.

It got worse. She went back. She began experiencing other symptoms, including a brutal bout of nausea. This time they did a CAT scan in an attempt to see anything the ultrasound might have missed. Again, they saw nothing. They gave her Maalox (which is composed of aluminum and magnesium antacids) and discharged her with a bucket for the ride home.

Remember when we explained that a MTHFR mutation prevents Heather’s body from breaking down certain metals, like aluminum?

Heather’s allergies are listed in her charts, and she is diligent about telling new doctors about them. Still, her third trip to the ER was spurred by a severe allergic reaction to the Maalox, with her face and eyes swelled shut and a menacing rash developing on her skin. She requested a steroid injection but was given Benadryl and again sent home. With symptoms continuing to worsen, inching closer to anaphylaxis, she returned to the ER for a fourth time in 48 hours, where they finally administered the steroid injection that cleared up her alarming drug reaction.

Heather told me that she feels like she is in an eternal waiting room, waiting to be addressed. Her story is just one of many examples of a healthcare system crumbling under the weight of the pandemic. Despite the tireless work that our healthcare workers do everyday to get the outbreak under control, the abrupt shutdown of other departments and medical practices have left many more thousands suffering.

We all know by now about the deficit in resources, equipment and PPE in hospitals around the country. In addition to those challenges, surging COVID-19 cases have forced hospitals to redirect some staff to COVID-related duties and other staff to be laid off entirely. In Heather’s family the oncologist treating her father’s pancreatic cancer has been furloughed indefinitely. Elsewhere, patients suffering heart attacks, strokes or other medical emergencies have had to compete with COVID-19 patients for care, especially for the finite beds and equipment in intensive care units. Even in situations where resources are available, many people are afraid to be treated in an ICU near COVID-19 patients for fear of catching the virus themselves. Hospitals like the Yale New Haven Hospital in Connecticut have reported fewer cases of heart attacks and strokes in recent weeks—likely because many heart attack and stroke victims have chosen not to go to the hospital.

In spite of that trend, large hospitals in metropolitan areas are bursting to the seams. In April, when cases were expected to exceed 100,000 in the US (before they actually did), makeshift ICUs were set up in university dorms, sports fields and even on a US Navy ship. Smaller hospitals in rural towns, however, have been forced to close and lay off their staff. Most hospitals’ income comes primarily from (elective) surgeries, clinic visits and non-emergency care. According to a recent report published by the Kaiser Family Foundation, treating just one uninsured COVID-19 patient who needs to be hospitalized could cost up to $40,000—an amount that hospitals already struggling just cannot afford. Some health centers did receive funding from the federal government that kept them afloat, but the details of the legislation was so unclear that a number of rural hospitals were unsure of whether they were eligible to receive funding.

Another facet of healthcare interrupted by the virus are clinical trials. Since March many hundreds in the US have been brought to a grinding halt, leaving researchers, practitioners and participants scrambling to determine what to do next. "For many patients, being enrolled in a clinical trial is the difference between staying alive to get to their next birthday or their child's next birthday," explains Rena Conti, a health economist at Boston University, speaking in an interview with KCUR. The abrupt discontinuation of such studies can have difficult and dangerous implications for both current and future participants. Because the data gathered during clinical trials guides the future treatment of participants, unplanned interruptions often result in skewed or misleading data—especially if participants become ill or die from COVID-19.

As tough as it’s been, these quandaries are nothing new. They were not created by the coronavirus (but accelerated, perhaps). They are symptoms of a decaying system— a machine running on broken parts, sometimes operating passably but failing far too often. Our health system is one that prioritizes profits over providing adequate care; it is one that leaves ailments untreated until they become emergencies; one that charges hundreds or thousands for COVID treatment to people who lost their healthcare along with their job; one that forces doctors to make impossible decisions about who to treat—and the unspoken obverse, who not to treat. Our healthcare system was never designed to accommodate everyone. This pandemic has only exposed the inequity and widened the gap between the haves and have-nots.

Hospitals and clinic schedules have been packed as physicians try to catch up with months’ worth of new and cancelled appointments. However, with COVID-19 case numbers trending upward again, it is unclear if hospitals will continue phased reopening, or if certain departments will have to shut down again. Heather has finally been able to schedule her surgery in mid-August. Even so, her follow-up appointment (and her next rheumatology appointment) are slated to take place over the phone. Heather is not sure when she will be able to resume in-person doctor visits. For now, like the rest of us, she is doing what she can to make it one day at a time.